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My Story
A Son's Story
In Closing
Message Board



EX = Idea/opinion/question posed;
RE = Forum Response

EX: My mother has been on Gemcitabine and has recently experienced a reduction of hearing in one ear. Is this related to the cancer?
RE: Perhaps this is related to the chemotherapy. I was told by an oncologist that patients receiving chemotherapy may develop a ringing sensation or a dissociative hearing effect. Perhaps this is what your mother is experiencing?

EX: Can anyone offer any input why, even after resection, survival rate periods are only between 6-18 months for pancreatic cancer patients?
RE: Several responses were submitted to this inquiry. Some patients that I've spoken with have survived much longer after resection, in fact 2 have been in remission for over 2 years. Another reason could be that there is the issue of pancreatic cancer recurrence. As indicated in the Elmer J. Phillips Pancreatic Cancer Web Site, at the time of diagnosis, it has been reported in numerous textbooks that rarely pancreatic cancer is confined to the pancreas - the likelihood of metastatic activity in other areas is of concern. Immediate testing should be done via, blood markers, CT-scan, and regular follow-up. Keeping yourself fortified through nutrition, stress management, non-exhaustive exercise and vitamin supplementation is advised to keep yourself strong. Another consideration is cell type. Remember that pancreatic cancer is of a particular cell type. If metastatic disease occurs that will be of another, dependent upon the affected organ. When treating metastatic disease, you are now treating combinations of cell type carcinomas. Do communicate any and all programs, diets and therapies you are involved in with your physician.

EX: I have recently completed chemotherapy and am told that things are looking well. I do feel depleted, can anyone give any advice about vitamins or nutrition to perk myself up?
RE: My nutritionist advised me to take vitamins A, C, E and B. Also, I've been advised to drink power drinks and freshly juiced fruits and vegetables, as they have strong healing and nutritional properties. I was told to stay away from commercial meats and chicken that have been hormone-enhanced as there was research conducted showing a correlation of hormone ingestion influencing growth stimulation of tumors. I was also told that tofu had anti-angiogenesis properties (cutting off the blood supply to tumors - this is now being studied).

EX: My mother had a Whipple resection. She is experiencing indigestion and diarrhea problems. Any suggestions?
RE: For diarrhea, we were told to take immodium. Smaller meals, more often during the day appears to work well for people experiencing indigestion. This will also help to make sure that they are not losing their needed nutrition, also helps to put less stress on the pancreas. Take H-blockers, pancrease - an enzyme for help in breaking down food.

EX: My father has been diagnosed with pancreatic cancer and I am frustrated that there is little information out there. Johns Hopkins has a good site and I just happened upon your site. It is frustrating that a centralized base of information is not available. Any suggestions you can give me on where the majority of information available is out there?
RE: I appreciate and acknowledge your frustration. Being a student of medicine and having worked in the area of research - I have learned where to look and it is through the research being conducted and the papers published by the project investigators. The majority of this work is being conducted at the larger research/teaching medical centers around the country. You can access research articles on pancreatic cancer through MEDLINE.

There are also numerous web sites on pancreatic cancer available, unfortunately, there is not a lot of cross-linking due to a number of factors. This web site has tried to publicize web sites from a multi-disciplinary approach. I have added three sites this month and am open to adding many more. It would be nice to see people and agencies working together but corporate funding, personal philosophies and professional liability appear to prohibit this from happening. That is why it is important for those who have accessed this site to give input so that others accessing it can get additional information that will help them in obtaining the best possible care and advice.

I recently asked a large medical institute in my city of residence to add this site to their directory of cancer support sites and agencies. They refused, due to their perception of personal web sites having subjective information or a litany of personal health complaints and negative editorializing that could psychologically influence one's personal perception of their health status or care. I've had people report to me that they have tried to link up their sites with other larger sites but due to conflicts of interest, these linkages are rarely seen to completion, thus less available information to the public.

I am impressed with the amount of information available at each one of the links you will see on this web site. Many of these sites were utilized by my family during my father's illness. I feel that many of these sites offered both conventional and "assumed" unconventional approaches. In the literature posted, there are some really informative books. Many of these I have read and regard quite highly. I do not want to personally endorse any particular book, program, medical center, or therapy. I hold beliefs and give credence to a number of different health approaches. Some have been rejected by my colleagues as "bunk" and others feel that they hold some validity within certain contexts. It is up to you to read the information available and form your own opinion based on what is stated and how it relates to your given situation and your personal philosophy. I can only state that it comes down to the access of information. I will close by borrowing from two adages, those being, "Knowledge is Power" and from the AIDS community, "Silence = Death".




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